Good to hear you are racking up the miles 3 weeks post surgery! I must admit I became a bit obsessive-compulsive about walking (and running pre-surgery) throughout my cancer diagnosis and treatment. It was something positive for my mind and body and most importantly it was something I had control over during a time I felt stripped of power. As per the recovery time from surgery I would take a mental note of how my body felt each morning when I climbed out of bed and figured as long as I wasn't feeling worse I was making progress!

So I have a permanent colostomy and therefore can't relate to your post-surgery bowel issues, sorry. Based on the gazillion of posts I have read from others on here, all sounds perfectly normal, especially this early in to the recovery and that you had a part of your rectum removed which tends to make the return to normal take longer.

I was sore for several days after getting my port inserted--it felt like my upper left chest area was used for a punching bag. However, it was never a sharp pain--those are the ones you have to worry about and report. By the time I had my first infusion, five days after getting the port in, I was fine with my port, physically (mentally is another issue). It never gives me any issues as I faithfully get it flushed every five weeks for the past eleven months post-chemo, but I am anxious to hopefully have it removed this summer after another clean CT scan.

Glad to hear overall you are doing well, all things considered. It's a tough road from start to finish and there will be both smooth and bumpy days. Just keep heading forward, the road does eventually come to an end.

8/3/15 Went in with a hemorrhoid, came out with a tumor8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)9/21 - 10/29/15 chemorad 28 tx (with Xeloda)12/17/15 APR with perm colostomyPathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer2/3/16 chemo port inserted2/8-6/2/16 8 rounds of FolfoxWith these odds, how have I not won the lottery already?!

4 Weeks post surgery today. Continued improvements for most part.BM's are still off, but better. I had 1 day of urgent movements (figures happened to be day I traveled to do some work on one of my second homes).The following day mostly just passed mucus until later in the evening when the more regular clustering stools came back.

I decided to dabble in some THC and CBD as its legal in WA state. I've read a lot of stories of how it has helped people through chemo as well as the effects of CBD specifically with helping colon cancer cells die.So I have experimented with vaping and an edible. The CBD strain does not create any high, but does induce a relaxation of body while actually being a bit of a stimulant in the body. The first time i tried half a dose of edible.The edible has 1:1 ratio THC and CBD and I was tripping a bit a few hours later (such a light weight). I'm glad I didn't eat the entire single dose. Now I use the edible around 7-8pm so that it starts kicking in around 9pm. The THCinduces sleepiness and i fall asleep deeply. I noticed immediately upon starting on the CBD that the mild lower back/rectal pain I had was gone. Some of the abdominal swelling i still had decreased. I also noticed improved BM's in that I was able to actually sit down and go. My mood was improved and I started eating about 50% more. I actually gained 2 lbs this week. Which is great considering I had lost 13 lbs from diagnosis date to post surgery.

Friday I go in for blood draws and chemo/nurse meeting. Then next monday is not only 5 weeks post surgery, but day one of chemo.

Tdubz wrote:Hey benben,

Try getting a squatty potty, it angles your body for better evacuation. Does it work? I don't know, but my friends got me one and I think it helps.

I'm 5 weeks post surgery. My BM's have decreased quite a bit. I'm usually in the 0-2 range per day now. First one of the day is almost normal, and the second does have a bit more liquid. I am also pretty much back to a normal diet.

my port didn't bruise too much, but one of the other patients I met at chemo today said his bruised quite a bit. It didn't bother the nurse, she still popped it right in. If I remember correctly, when I got the port, they said to expect bruising but if you see like blood pooling under the skin like a blood blister then call your doc.

I did try to elevate my feet using some boxes to see if I would benefit from the squatty potty, but that actually didn't help at all - seemed to make things worse.The angle that worked best for me was an obtuse angle of the legs as opposed to an acute angle or the typical 90 degree angle of regular toilet. As stated above things have improved for me somewhat in this area (thank god).I'm able to sit down a good 75% + of the time now to complete the job - hopefully that will continue to improve. My port bruise has diminished to just a slight purplish hue right at the port. Looking better there too.

Soccermom2boys wrote:I was sore for several days after getting my port inserted--it felt like my upper left chest area was used for a punching bag. However, it was never a sharp pain--those are the ones you have to worry about and report. By the time I had my first infusion, five days after getting the port in, I was fine with my port, physically (mentally is another issue). It never gives me any issues as I faithfully get it flushed every five weeks for the past eleven months post-chemo, but I am anxious to hopefully have it removed this summer after another clean CT scan.

Glad to hear overall you are doing well, all things considered. It's a tough road from start to finish and there will be both smooth and bumpy days. Just keep heading forward, the road does eventually come to an end.

Thank you. I'm already looking for port removal and getting back into an exercise routine. I pray you'll have another clear scan coming this summer and can have your port removed and sail on into NED.

benben wrote:Thank you. I'm already looking for port removal and getting back into an exercise routine.

I haven't seen this thread until just now. You and I share similar backgrounds and diagnosis. My lymph node involvement was similar and I have no regrets about doing 6 months of chemo. What I asked myself was "Could I live with the regret if I had a recurrence and didn't do everything my doctors suggested?" It's a personal decision but for me it was a clear choice. FYI, during chemo I was eventually able to start hitting the gym again. I avoided certain exercises with the port but it was absolutely doable. They had me keep mine in quite a while after chemo was done as a just in case.

I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

The past couple days I've been passing a lot of mucus.Yesterday I had 9 bowel movements. About 3rd movement started noticing some mucus and by movement 7 it was pretty much just mucus.I know that this can be "normal" i suppose. My big concern was the past couple mucus stools also contained red/pink color which I'm concluding is blood.I called my onc nurse and left a voicemail. Got a call back from the Surgeons "nurse". He seemed to think it wasn't a big deal, of course at first he thought I had an ostomy.I had to let him know I had a straight resection done at time of tumor removal 4 weeks ago. He said he'd pass the info along to the Surgeon and I might hear back from him, he also encouraged me to tell my onc.I did not hear back from the surgeon today. I'll call the onc direct tomorrow. I figured onc nurse would pass it along, but no word back from onc office. My biggest concern is starting chemo if I have some internal bleeding going on as I've read folfox can increase bleeding. Not to mention the immune suppression issues if there is an infection. What you guys think? Valid concern? I do have chemo walkthrough on friday and will make sure this is fully discussed prior to chemo starting monday.

horizon wrote:

benben wrote:Thank you. I'm already looking for port removal and getting back into an exercise routine.

I haven't seen this thread until just now. You and I share similar backgrounds and diagnosis. My lymph node involvement was similar and I have no regrets about doing 6 months of chemo. What I asked myself was "Could I live with the regret if I had a recurrence and didn't do everything my doctors suggested?" It's a personal decision but for me it was a clear choice. FYI, during chemo I was eventually able to start hitting the gym again. I avoided certain exercises with the port but it was absolutely doable. They had me keep mine in quite a while after chemo was done as a just in case.

Thanks for the feedback Horizon. I'm up for trying the chemo, provided my body is ready for it internally. I'm aware of the statistical increases in survival rate so am looking forward to going as far as I can with the chemo treatments.As far as hitting the gym during chemo, were you post surgery or pre when doing chemo? Do you recall how long after surgery/chemo started you hit the gym? I actually canceled my membership at Golds and they were nice enough to refund the money I had given up front for the entire year.

Cathie wrote:just to encourage you I was d'xed Oct 3, 2002 and I'm still here.

cathie

Thanks Cathie, that is encouragement. I like to hear from those that have traveled a similar trail and have made it through.There are many good outcome stories here.

Chemo is not customized once a protocol is selected, unless it is modified due to side effects or patient request.

I write to tell you neuropathy from oxaliplatin is no joke and can, though not necessarily, be severe.

So my suggestion is to research the risks of oxaliplatin induce neuropathy so you may weigh the potential risks against the potential rewards of its use.

I tried to mitigate the potential for oxaliplatin-induced neuropathy by doing 9 instead of the usual 12 Folfox 4 treatments, but still got severe neuropathy in both my feet. The neuropathy only began after chemo stopped and it is as bad today as it was then, 6 years ago.

I suggest you research all the drugs involved in your chemo, even the pre-infusion anti-emetics so you'll know how fast they metabolize out of your system and what side-effects they may have.

All drugs in the chemo regimes have side effects and in my opinion, it's best to be aware of them.

Oh, also guard against chemo-induced dry mouth as lack of saliva contributes to dental cavities. I had 5 new cavities when I finished chemo and my onc never once thought to mention this side effect.

benben wrote:As far as hitting the gym during chemo, were you post surgery or pre when doing chemo? Do you recall how long after surgery/chemo started you hit the gym? I actually canceled my membership at Golds and they were nice enough to refund the money I had given up front for the entire year.

I was post surgery. My memory is fuzzy but I think I went 6 weeks before starting chemo and then went back to the gym a few weeks after that. My onc said he would prefer if I went late at night when less people were around. I could only push up baby weights when I started up again but it's what helped keep me sane during that period.

Chemo is not customized once a protocol is selected, unless it is modified due to side effects or patient request.

I write to tell you neuropathy from oxaliplatin is no joke and can, though not necessarily, be severe.

So my suggestion is to research the risks of oxaliplatin induce neuropathy so you may weigh the potential risks against the potential rewards of its use.

I tried to mitigate the potential for oxaliplatin-induced neuropathy by doing 9 instead of the usual 12 Folfox 4 treatments, but still got severe neuropathy in both my feet. The neuropathy only began after chemo stopped and it is as bad today as it was then, 6 years ago.

I suggest you research all the drugs involved in your chemo, even the pre-infusion anti-emetics so you'll know how fast they metabolize out of your system and what side-effects they may have.

All drugs in the chemo regimes have side effects and in my opinion, it's best to be aware of them.

Oh, also guard against chemo-induced dry mouth as lack of saliva contributes to dental cavities. I had 5 new cavities when I finished chemo and my onc never once thought to mention this side effect.

Again, good luck with it all!

Regards,Bill

Thanks for the advice/info Bill.I went to my Nurse/Chemo visitation today. I mentioned your story of no neuropathy during treatment but it developing post treatment.She said that was the first she had heard of it. She said typically people get neuropathy during treatment and that after a couple weeks post treatment it goes away.We went over a lot of side effects including the dry/mouth - sore issues and they suggest a baking soda/salt water rinse every time after eating and before bed.I also have some mouth spray sent to me in a care package from a relative who works at a hospital. Thanks for the well wishes. I hope you find some relief in your ongoing symptoms.

benben wrote:As far as hitting the gym during chemo, were you post surgery or pre when doing chemo? Do you recall how long after surgery/chemo started you hit the gym? I actually canceled my membership at Golds and they were nice enough to refund the money I had given up front for the entire year.

I was post surgery. My memory is fuzzy but I think I went 6 weeks before starting chemo and then went back to the gym a few weeks after that. My onc said he would prefer if I went late at night when less people were around. I could only push up baby weights when I started up again but it's what helped keep me sane during that period.

Thanks for info.I moved in December to a place that has no YMCA. Had I still been in Eugene OR. I guess I could apply for that.I had been a paying member of the YMCA there for the 3 years I lived there. Worked out 3 times a week and played pickup basketball all the time with the local High School and college guys.

As for now, I just bought some 40lb dumbbells to try and maintain some muscle mass during the next 6 months. I normally do a lot of dumbbell work on upper body - so between that and some yoga and long walks hopefully I'll pull through with as much grace as can be expected.

So had my preliminary nurses visitation at the chemo center today.Mostly a rehash of all the same old info, but got to see the facilities.Everyone has fairly large curtained off areas. Looks fairly updated, clean, and accommodating.

I was concerned about mucus in stool, especially with blood - but my Oncologist has been out of town for past few days.He's set to return Monday, which is my first day of treatment. I also am concerned about a cut to my index finger. I managed to slice a chunkout of the tip of my index finger while cutting some cardboard for packaging during work. I went to urgent care to make sure I got best treatment possible.Since it was not a slice, but a chunk they said they couldn't sew it and just cleaned the wound thoroughly, slapped on some antibiotic ointment and a couple bandaids. The Onc nurse seemed to think neither the cut nor the bloody mucus would detour the chemo. It would all be relative to my bloodwork, which is pretty much 100% of the time in normal range.Even prior to surgery my blood ranges were all normal - including CEA. My designated care-giver (my mother), dropped a question to the onc nurse about who I need to see to get support at home.She decided she wants to go back home as she misses her dog and husband. Probably didn't like that I informed her several times that my house has strict "No shoe" policy and I got on her about coming into the houseright after smoking cigarettes. I told her she needed to wait 15 minutes after smoking before coming back in the house. Uggh. Here's to Monday, Hoping it goes well.

Good luck with your upcoming chemo. Best advice I can offer, drink a lot of water starting tomorrow. You will lose it within 48 hrs of infusion. Or at least I did. You do not want to get dehydrated, that will put in in the ER real fast.

In time, keep some oven mitts near your refrig. Anytime you need to grab something from freezer, you will want to use those mitts. Your body will tell you when you need to start that. And at some point, all liquids will need to be at room temperature.

I always got an breakfast egg/cheese sandwich on way to infusion. Figured egg would give me protein. Food in my stomach kept nausea at bay. So I would eat several small meals vs 3 meals a day.

benben wrote:As for now, I just bought some 40lb dumbbells to try and maintain some muscle mass during the next 6 months. I normally do a lot of dumbbell work on upper body - so between that and some yoga and long walks hopefully I'll pull through with as much grace as can be expected.

Even if you can't during your treatment I'm a big believer in "muscle memory". You'll be surprised how quickly you can get back into fighting shape. When I went back during my treatment I could barely bench with the 40lb dumbbells.

I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

Good luck with your first treatment. I just finished my first treatment last week, and while I didn't feel great for a few days, it wasn't nearly as bad as I thought it would be. Week two has been good too. I've felt great all week. Monday will be round 2 for me.

Well, I can only say I wouldn't take her word for it. Personally, I recommend becoming as informed about your own treatment/side effects as you can by doing your own research. Many people just leave it all in the hands of their oncology doctor and nurses—your choice of course

You can look up many studies on "oxaliplatin-induced neuropathy", e.g. The Johns Hopkins Gazette of Jan 30, 2012 where it states, " Oxaliplatin, a platinum-based anti-cancer drug that’s made enormous headway in recent years against colorectal cancer, appears to cause nerve damage that may be permanent and worsens even months after treatment ends."(http://archive.gazette.jhu.edu/2012/01/ ... nt-damage/)

... sore issues and they suggest a baking soda/salt water rinse ...

My suggestion was regarding dry mouth, not sores, for which the remedy would be something like Biotene, not baking soda.

Well tomorrow is day one of chemo. Hoping for no major complications/symptoms.Aside from the cut finger (which seems to be making good progress on healing - no bleeding) and the blood in mucus (which haven't seen in a few days), I had an issue with one of the prescription anti nausea medicines - Zofran.The Onc prescribed for 3 times a day when normal dose is 1 times a day and so my insurance denied payment. So that has to get figured out and hopefully by tomorrow so I can pick it up on way home after infusion. I was able to get the other anti nausea medicine that they only want me to take if zofran doesn't work. Obviously I called the onc center a few times to discuss this and while my onc was still out of town they said that during infusion I'd receive anti nausea meds that would last at least 24 hours and if needed the secondary anti nausea med could be used. Will try to keep up with small meals and ginger treats to minimize nausea if it does occur.

Lee wrote:Hi and welcome,

Good luck with your upcoming chemo. Best advice I can offer, drink a lot of water starting tomorrow. You will lose it within 48 hrs of infusion. Or at least I did. You do not want to get dehydrated, that will put in in the ER real fast.

In time, keep some oven mitts near your refrig. Anytime you need to grab something from freezer, you will want to use those mitts. Your body will tell you when you need to start that. And at some point, all liquids will need to be at room temperature.

I always got an breakfast egg/cheese sandwich on way to infusion. Figured egg would give me protein. Food in my stomach kept nausea at bay. So I would eat several small meals vs 3 meals a day.

Enjoy the weekend, good luck Monday.

Lee

Thanks Lee, I have noticed you mention the egg/cheese sandwich as well as other and I intended to do just that.

Tdubz wrote:Good luck with your first treatment. I just finished my first treatment last week, and while I didn't feel great for a few days, it wasn't nearly as bad as I thought it would be. Week two has been good too. I've felt great all week. Monday will be round 2 for me.

Thanks Tdubz. I've been following your progress. I'm glad your first treatment went well and hope I have a similar experience. Gluck to you on your second treatment, may it and all following treatments go smoothly - keep us posted.

horizon wrote:Even if you can't during your treatment I'm a big believer in "muscle memory". You'll be surprised how quickly you can get back into fighting shape. When I went back during my treatment I could barely bench with the 40lb dumbbells.

yeah these can go 10-40 lbs. So I'll see what i can do with them. Just the day before my scope I was working 120lb barbells for press and 40 lb for curls. I'm sure I've already lost a lot of those gains from being out of lifting for almost 2 months. Shifting gears to low weight and more reps just to maintain.